I met DJ Evans online several months ago through our shared interest in hearing loss awareness and advocacy. Like me, she is a mom with hearing loss. Unlike me, she also lives with Meniere’s Disease.

Those of us who don’t live with Meniere’s likely have a vague idea of what it is. Before interviewing DJ, I thought Meniere’s was simply a hearing disorder that affects balance. But is that all it affects?

Lipreading Mom: What is Meniere’s Disease, and how has it impacted your life?

DJ: I grew up hard of hearing only my parents didn’t know and neither did I. They never had my hearing tested and just thought I was talking loud and not listening because I was a hyper kind of kid and the doctor agreed. When I was 16 I decided to get my hearing checked because I was tired of people saying I was loud and I thought there must be something to it. The audiologist told me I needed hearing aids in both ears. I decided I only needed one because they were very expensive and being out on my own I didn’t have a whole lot of money. There was also my pride!

The hearing aid helped a bit at first but I could never adjust to all the back ground junk noises. I kept going back and complaining of dizziness and fullness in my ear and the audiologist just said it would take time to adjust. I only wore the hearing aid when I needed to and to make a long story short, the dizziness just kept coming and going and eventually started in my other ear as well. I just kept compensating.

In my 20s I really started to notice the drop in what I was used to hearing as well as noises that started. I learned later on that it was tinnitus (ringing in the ears). I had my first two kids in my mid-20s and pregnancy seemed to aggravate my ears. I had my youngest and last child at 33. The dizziness and fullness started coming all the time. I searched out an audiologist who sent me to a specialist who ran a bunch of tests and then welcomed me to the world of bilateral Meniere’s Disease.

Meniere’s is usually only diagnosed in one ear. Both (bilateral) is not as common. Meniere’s is a disorder of the inner ear that can affect hearing and balance to a varying degree. It is characterized by episodes of vertigo, low pitched tinnitus, and hearing loss. The hearing loss has a fluctuating then permanent nature, meaning that it comes and goes, alternating between ears for some time, then becomes permanent with no return to normal function. It is named after the French physician Prosper Ménière, who, in an article published in 1861, first reported that vertigo was caused by inner ear disorders. The condition affects people differently; it can range in intensity from being a mild annoyance to a chronic, lifelong disability. You can read more about it here.

It has impacted my life to varying degrees. My first drop attack happened coming down a flight of stairs, and I fell and broke my wrist. The second big one happened in a grocery store, and I was really embarrassed. It prevented me from driving when I wanted because I was afraid. I drove a school bus around that time, so I had to give it up. The loss of income, independence and the fear made me quite anxious and depressed. At one point I remember feeling like I was going to die. I even asked the specialist to give me a vestibular nerve dissection in both ears. I was willing to go totally deaf just to get rid of the symptoms. Of course he said no!

LRM: How did hearing loss and Meniere’s affect your life as a mom?

DJ: When I was pregnant with my last child I knew I had to do something, put something in place because it was going to be harder with three children. I was already struggling, and my son had a speech problem from developmental delays. After thinking about it for a while I decided since both kids were very visual that I would teach them sign language.

I photocopied black and white pictures from a book I bought called Signs for Me. I let the kids color them, and I glued them onto construction paper and put them up all over the house. The sign for bathroom was prominently displayed on the bathroom door. The sign for teeth brushing was stuck on the bathroom mirror, and the sign for bath stuck on the wall beside the tub. They picked it up really fast, and the signs I didn’t know I learned from a CD-rom I purchased off the Internet. Eventually I took a sign language class, and I learned to lip read as well. The thing about lip reading that I discovered was that you don’t know how much you already can do it until someone points it out to you.

I explained Meniere’s to the two oldest kids and my stepson. I told them why it happens, what it does and what to do in certain situations. They had seen me drop once before and were quite calm about it. I made sure I did not hold the baby when I was dizzy because I never knew what would happen and thankfully nothing did! As the baby grew, I taught her American Sign Language (ASL), and she could sign before she could speak. People used to think she was deaf.

LRM: What coping strategies work for you in communicating with your grown children and others?

DJ: I believe in total communication, meaning to do what it takes and don’t exclude anything. I can sign. If the person I am communicating with can’t, then I try to lip read and explain to them to face me and speak clearly and slowly. If that doesn’t work I have a pad and pencil on hand. If that doesn’t work and the circumstances permit, I get an ASL interpreter. Usually if people cooperate there is no problem. I have a frequency modulated (FM) system I sometimes use, but it’s not great all the time due to fluctuations in my hearing. My kids know (but still forget) that I can’t hear them in the other room and usually seek me out. They don’t sign as much as they used to now that they are grown, except for my oldest son. I still have to remind my youngest to slow her talking down so I can understand her. She will sign a word or two if I don’t understand them. Everyone has a smart phone, so there is quite a lot of texting or emailing going on as well.

LRM: I like your philosophy, “Everyone wants happiness, no one wants pain; but you can’t make a rainbow without a little rain.” Where did that quote come from? Did you write it? What does it mean to your life?

I saw the quote on the Internet one day while browsing. I was feeling low that day and after I read it I thought, “Yeah. That’s so true!” I can’t expect to be handed everything on a silver platter. I thought back to all the obstacles I had overcome and all the positives I had because of my ideas and hard work, so I started signing my emails with the quote to remind me how far I had come, how far we as a family had come. Maybe it would remind others of their hard work too. We are thankful for every rainbow and we know we can weather any storm.

LRM:What do you enjoy doing in your spare time?

DJ: In my spare time I ride my motorcycle when I can. Therapy is expensive, but wind is cheap! I am an avid crafter (crochet, knit socks, paint, bead and quill work, and way too much to list here). I raise meat rabbits, and I am training a service dog for my son.

~*~*~*~*

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8 thoughts on “What is Meniere’s Disease? An Insider’s Perspective”

Reblogged this on Another Boomer Blog and commented:
I have this dratted problem – Ménière’s disease – and it has taken a good deal of my hearing and left me with impaired balance. I hope everyone reads this and shares it because inexplicable dizzy spells can mean trouble for hearing. Please share – the person you help may be someone you love.

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Great interview. I have had ringing in my ears for decades, but within the past year have begun to experience the dizziness and sensation of moving even when I am standing still. I’m going to do more reading on Meniere’s!

It has since occured to me that my mother may have had Meniere’s since she used to end up in bed, miserably ill with dizziness and lightheadedness and “feel like she was dying.” In fact, once she scared the bejesus out of me (I was 12 or 13) by having me sit with her and hold her hand while she told me not to worry if she were to die because she’d be just fine and so would I. Talk about the hair standing up on the back of my neck. And she was anything BUT a drama queen. She did not die but I remember to this day the feeling of helplessness I experienced. Whew!

Miss Shanna, thank you for interviewing Dj Evans. Some siimilarities in her life and mine touched my heart. I also was a school bus driver and hated leaving my ‘angels’ due to arthritis and now Meniere’s. God is my ultimate “spirit-lift” when these maladies get me down. I am inspired by Dj’s quote “Thankful for every rainbow. We can weather any storm”. God bless your devotion to His work, Miss Shanna!